High End Skilled Nursing Facility with independent living on site?

[Anonymous]

I'm so sorry, OP. My MIL died of pancreatic cancer and both she and FIL were in total denial about what the endgame would be. There really is only one endgame, and the question is how much suffering your dad and mom are willing to endure before then. With my MIL, there was so much unnecessary suffering. I think she was willing to throw in the towel sooner but my FIL was so opposed to stopping treatment. So much magical thinking on his part.

I think it's time for a conversation, if possible, with both parents, separate or together, about what they want your dad's last weeks/days to look like. If you live in a medical aid in dying state that's also something to look into if that's something they're open to.

It definitely doesn't seem like the right time to coordinate trying to get into a CCRC or other long-term living situation for your mom, though, and having to clean out, move, etc. One step at a time.

[Anonymous]

I’m so very sorry for the experience your dad is going through, and you are doing a great job in trying to help him. If he’s got pancreatic cancer why hasn’t his doctor suggested home hospice? Or a full service hospice first? Don’t let the word hospice scare you away. The services he and you need to navigate this difficult situation are better when in a hospice environment. The cost is fully covered by Medicare. He has a terminal illness that can be brutal. Hospice care extends to the family as well with counseling services and support.
I’m very sorry that your dad is dealing with this. My prayers are with you all.

[Anonymous]

Anonymous wrote:Goodwin House - amazing place but not cheap

It's also very cliquey.

[Anonymous]

In my county in Maryland you can self refer to hospice. You do not need a doctor referral.

You call hospice and they send an RN out to the home to make a determination as to whether Dad qualifies for hospice.

[Anonymous]

Anonymous wrote:I’m sorry you’re going through this Op. perhaps this is an ignorant question but if he is dying, with only weeks or months, why the need for rn 24/7 and to return to hospital for ct scans etc? I would think palliative care at home is less invasive? And again I’m asking because I don’t know, no judgment here….

I was going to gently say the same thing. No more CT scans. Palliative and hospice care only.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I’m sorry you’re going through this Op. perhaps this is an ignorant question but if he is dying, with only weeks or months, why the need for rn 24/7 and to return to hospital for ct scans etc? I would think palliative care at home is less invasive? And again I’m asking because I don’t know, no judgment here….

OP here.

This would all be so much easier if they shifted to palliative care, but the doctor insists we’re not there yet. I’ve read that on average patients (maybe it was just those with cancer/his age?) are moved to hospice only in the last 2 weeks before death (when ideally it would be called much earlier) and I think he’s victim to that. They just keep doing more and more and more.

You can say no. I’m sorry for your situation but your family has the right to say enough is enough, let dad die in peace.

This makes me mad. This doctor should not be driving this. Read this book to help manage your decisions and deal with these doctors.

Being Mortal Illness, Medicine and What Matters in the End, by Atul Gawande

[Anonymous]

Use these words, "against medical advice we/I are declining further treatment beyond palliative care."

"Against medical advice" is important. Doctors are not allowed to discriminate based on age.